Perfect newborn pic hid something terribly wrong

Posted
Wednesday, July 26, 2017 12:55 pm

Daniella Levy

By Daniella Levy, Kveller via JTA

The composition is exquisite: my firstborn, Hallel, maybe a week old, is lying on his back on a striped felt blanket next to his grandpa. They are gazing lovingly into each other’s eyes. Such a tender moment.

Only, we later learned, Hallel wasn’t actually gazing at anything.

He was completely blind.

We had no idea.

Hallel was born at a birth center in central Israel — a three-week-early, quick and easy birth. I felt like I won the lottery. He was tiny at 5 pounds, 8 ounces, but he seemed completely healthy. The pediatrician who checked him shortly after the birth was impressed by his muscle tone (I could have told her that months before!) and pronounced him healthy. We took him to my parent’s house just in time for Shavuot.

In the two months that followed, Hallel seemed to be developing normally. At six weeks, the well-baby care nurses waved a pen in front of his face and said they thought he was tracking. The pediatrician checked him that same day and said there were just two things that concerned him.

There was a “click” in his hip joint, so we should get an ultrasound to rule out hip dysplasia. And for some reason, the doctor was unable to attain a positive result on the “red reflex” test in the baby’s eyes — something he said he had never come across. The doctor said it could simply be that Hallel’s pupils constricted very quickly. Either way, he recommended coming back another day to try again or taking him to an ophthalmologist.

We took care of the hip thing; the eyes thing got lost in the shuffle. After all, the nurses said he was tracking, right? And we were dealing with so much anyway: Over the course of the next two weeks we contended with my husband coming down with swine flu and developing pneumonia, then Tisha B’Av, then preparing for a trip to America to show off our precious new addition to the family. The red reflex thing didn’t seem all that urgent.

We first noticed something might be wrong when my dad was standing with us in line at the airport. My dad is a physiatrist who specializes in neurological rehab; there was something about the movement of Hallel’s eyes that raised a red flag for him.

He thought long and hard about whether to say anything — he didn’t want to ruin our trip, and we would be gone for about a month — but he finally wrote to us a week or so later to express his concern. He offered to schedule an appointment at the pediatric ophthalmology clinic at Hadassah Ein Kerem for shortly after our return.

We joked with him about him being hysterical and a hypochondriac by proxy, but underneath it all, the moment he said something, I knew he was right. There was something wrong. I had never seen what the well-baby nurses had claimed to see. Hallel did not seem to track objects with his eyes, nor did he focus on them. His eyes sort of wandered around, and most important, I never felt like he was actually looking at me. He never looked into my eyes. My relatives tried to reassure me and I tried to take comfort in their reassurances, since I knew there was nothing to be done about it at that point anyway.

When we did finally get back home and take him for the appointment at Hadassah, my dad’s intuition was confirmed. Hallel had bilateral congenital cataracts. He hadn’t been able to see a thing since before he was born. Now that he was almost 3 months old, he was just on the edge of the window after which his optical nerve might start to atrophy from the lack of stimulation. He needed emergency surgery to remove the cloudy lenses from his eyes.

And so, one week later, at 3 months of age, we brought him to the operating room for the first time.

The rest is a long history of medical procedures, issues and therapies. Long story short, Hallel is now 8 years old and is doing fine. He had artificial lenses implanted last year, and he can see well enough to function normally in school (with some assistance with reading and extra support from a team of visual, speech, occupational and other therapists).

For months after his initial surgeries, maybe years, I found it too painful to look through the photos I took of him in those first three months. The dramatic irony was too overwhelming. I felt a crushing sense of guilt for not knowing. As if I could have known — a brand-new, wide-eyed 22-year-old mother — and as if knowing could have made any real difference to Hallel’s vision.

Over time, I learned to forgive myself, and even to see those first three months as a blessing. I had three months to get to know Hallel without the shadow of visual impairment and medical issues looming over us, without needing to figure out how to relate to him as a baby with special needs, or a baby who wore glasses (!). For those three months he was just a baby. Just my Hallel. In retrospect, I am grateful for that brief oasis of ignorance.

Daniella Levy is an Orthodox Jewish mother of three, rabbi’s wife, writer, translator, self-defense instructor, bridal counselor, black belt in karate and certified medical clown. Her debut novel, “By Light of Hidden Candles,” is now available for pre-order in advance of its October release by Kasva Press. She is also the author of “Letters to Josep: An Introduction to Judaism,” and she blogs about Judaism and life in Israel at LetterstoJosep.com.